Thursday, November 29, 2018

A Bias Reward

“There has to be a better way.” I’m sure
that’s what some people were thinking when they saw our Facebook Live post earlier this week outlining how we’re going to start rewarding hospitals/homes for 3 quarters in
a row with a GO Kart.

I figure if I’m able to make a Facebook Livepost as myself in first person then I can do a follow up blog post in first
person as well - #Secretsout.
First off, I agree that there was probably a better way to announce how and/or
why we’re going to dedicate a large set of funds strictly to reward and
entertain kids who are confined to their beds. Secondly, I understand I
probably could have gotten an official vote from the board on their opinion on
whether and/or how we should use the potential incoming funds. Should we save
those for our When We
Grow Up dreams or simply focus on the more immediate needs?

Although things have been stable, I figured
that since I was going through my least favorite set of testing, EEGs, I could
make an executive decision to help kids who are going through similar situations.
This EEG test will always hold a negative, albeit special, place in my heart
since, as touched on the Can’t
Complain blog post, it was during this set of testing that I
received some of the scariest news before my surgery. Then it was during
another EEG test that I had my one and only
grand mal seizure, which derailed my safety net that I set up for
myself.

With November being epilepsy awareness month,
I’ve been sending special shipments to kids whose parents used hashtags related
to epilepsy, ranging from something I agree with (e.g. #seizuressuck) to
something more broad (e.g. #epilepsy). As always in those letters, I tell the
children they were/are a VIP (Very Important Patient/Person), so they deserve
extra cards. Then I highlight how they’ll be in my prayers since us overcomers
have to stick together. Here are some examples from those recent deliveries
this month:

I’ve mentioned before that I’m proud that
I’ve been strong enough to battle with this special (dis)ability, #purplepride,
but have never shown myself at a low point.

In the past I shared the article from the University
of Michigan Health System that highlights the improvement I’ve made
and the connection with my doctors, but didn’t touch on the ongoing tests
and/or how over the years epilepsy has impacted work and life outside of it.

With this Facebook Live, I wanted to give
everyone as close up a view as possible as to what I was thinking and have been
going through. One thing I could
show is what it’s like not being able to leave your room because of procedure.
I could try to give you that glimpse for a patients’ perspective. I’ve provided
descriptive stories in the past, pictures throughout the process, and my
expressed personal passion, and I hope it helps people understand how and why
they should make a difference for the children who are confined to their rooms
based on their medical conditions and/or testing.

Therefore, publicly overcoming this most
recent EEG experience hopefully helps turn things around. I’ll use this most
recent experience to explain why I’ll never be able to forget about the kids
who are confined to their rooms based on their conditions. I’ve felt what some
of the kids are going through EEGs and epilepsy and can’t complain since there
are some kids who are going through some other more terrifying experience.
Based on that knowledge, I made an executive decision. Any hospital/home who
consistently responds and lets us know they’ve received the cards we sent to
their children - and confirms they were handed out - will receive a GO Kart. I
know all about the Hippo name HIPPA,
where hospitals can’t send pictures of the kids without a more detailed
process/request form, but they can send pictures of their employees so we know
that they’re still our correct contacts and that the kids who are confined to
their rooms are being encouraged. We’re currently partnering with nearly 100
locations and those systems are $3500 each. We’re hoping that with signing up
for a Facebook non-profit where people can raise money on their birthday, our site,
GoFundMe,
corporate giving and other potential methods we can raise enough money to
reward every hospital/home that responds with a picture.

We could
raise funds for more Beanie Babies or start to raise funds for the scholarship
or save up to hire some employees, but based on these EEGs and being stuck in a
hospital room again, I’m setting up A
BIAS REWARD and striving to make sure that each kid who’s stuck in their
room can be encouraged.